Balancing Personal Needs and Future Generations’ Well-Being: A Qualitative Pilot Study on Generative Experiences of Emerging Adults with Congenital Heart Disease

Abstract Generativity, defined as the need to make a meaningful contribution to future generations, encompasses reproductive, social, cultural, and institutional dimensions. To date, research has primarily focused on middle and late adulthood. Particularly in later life and in the context of chronic disease, generativity serves as a resource in coping with mortality awareness. However, chronic disease can also emerge in young adulthood, significantly impairing generativity in its traditionally reproductive sense and necessitating alternative forms of generative action. This pilot study provides initial insights into the challenges and expressions of generativity in emerging Adults with Congenital Heart Disease (ACHD), exploring how their condition shapes generative concerns and behaviors. Using interpretative phenomenological analysis (IPA), we analyzed interviews with 14 emerging ACHD, aged 18–29. Two themes were identified, reflecting generative experiences of emerging ACHD: (1) biological and parental generativity , with the subthemes “I Endanger the Future of My Own Children” and “Despite the Risks, I Aspire to Have My Own Children”; and (2) societal generativity with the subtheme “I Want to Create Something that Outlives Me”. Generative aspirations seem to be central concerns of emerging ACHD, emphasizing the need to address generative challenges in clinical care and psychosocial interventions. Further research is needed to explore the manifestations, functions, and influences of generativity in this population. Registration was completed on February 18, 2022, in the German Clinical Trials Register (DRKS) under project number DRKS00028096.